MomtoGiuliana
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Posts posted by MomtoGiuliana
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So sorry you are having a flare up. Please take care.
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9 minutes ago, toomanyproblems said:
a reasonable idea might be to look for sources that are drawing from a significant consensus of those involved in the current scientific understanding on the topic
This is an important point.
Thank you for sharing your perspective and knowledge!
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20 hours ago, Pistol said:
Well- that is the meaning of having immunity. I don;t know why that would be meaningless - it is HOW immunity WORKS!
It is confusing. I think one problem is that there is not enough data yet and the immune system is complex and our knowledge of COVID is not good. One fact I am aware of is that there have been quite a few people who have been infected w COVID more than once--which does suggest that immunity weakens over time.
This recent article may be helpful.
https://www.medpagetoday.com/special-reports/exclusives/95156
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You might find this recent talk valuable. He talks about hydration/dehydration.
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@Pistol good question. A friend of mine my age but with no significant health issues was told by her doctor to have antibody testing before deciding on getting the booster. However, I read elsewhere that this does not provide information that is useful in making a decision about whether to get vaccinated or to get the booster.
"having detectable antibodies from a blood test "only means that your immune system mounted a successful response then and that you have immune memory." This does not translate into useful information in terms of how well protected you are, apparently.
I am glad to hear that so many got the booster without significantly more severe side effects.
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PS for anyone who did not see this and may be interested. As part of the recent series of videos that were released in October, we have one talk on the topic of COVID and dysautonomia.
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I am planning to get the booster shot, although not sure I really fit into any of the listed criteria. From what I have read it seems it is highly questionable that most people need the booster to avoid serious illness.
I am curious if anyone has had the booster shot and if so what side effects you experienced.
I was pretty sick for a day+ after the second Moderna (101 deg temp, severe aches, fatigue), so I am not excited about a repeat, or worse side effects, especially if it is not really going to give much more protection than I already have.
My younger sister just got the Pfizer booster last week and her side effects were worse than with the 2nd shot. She had severe fatigue and muscle pain for several days.
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17 hours ago, CallieAndToby22 said:
Does anybody know why some patients get sick after losing blood while others feel better? I remember this discussion years ago on a young adult mostly ME site and nobody seemed to understand this issue.
Do you mean losing blood from having your blood drawn for tests--or are you referring to more significant blood loss?
There is the vasovagal reaction which some people have from the procedure. It can be short lived but also can be quite severe in some patients from posts I have seen in the past here.
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I get bad tinnitus and other sounds in my ears when POTS flares up. I think it can be part of POTS. But this symptom was particularly bad when I was diagnosed with low B12. Ever since taking B12 this symptom has improved for me. Just a thought for you. I am sorry you are having such a hard time.
Pistol--I hope you are better this evening.
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So sorry. I've been there. PVCs are so disturbing when they are frequent--and add that to feeling dizzy--it's understandable you would have anxiety.
It sounds like you've had pretty thorough evaluation if you were in hospital and also just now seen by an EMT. Is there a plan for further evaluation?
Keep in mind that on this forum we can share our experiences but we can't give medical advice.
I don't have much experience with pulse oximeters. I do know tho that when I had severe POTS in the past with a lot of PVCs and other symptoms that I became very fixated on my heart rate and on the frequent PVCs and it increased my anxiety.
Things that sometimes help me with frequent PVCs are increasing potassium and or magnesium intake (through food not with a supplement--although supplements are also possible, you'd want to talk to a dr before taking a potassium supplement in particular). Sometimes I have been told my potassium or magnesium are a bit low. Epsom salt bath or foot bath is a good way to get some extra magnesium from what I understand. I even have done salt float therapy when in a flare up and it did help me feel better--it's very soothing if nothing else. However it will likely drop your blood pressure (floating in warm water) so you'd want to be careful with that if you have low bp (particularly standing up too fast from the bath).
Another thing that helps reduce PVCs for me is getting IV saline. In general this helps improve my POTS symptoms when in a flare. My dr orders them for me at a nearby infusion center at a hospital.
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The symptoms you are describing are consistent with symptoms I have had when in a flare up. When in a flare up any small stress can set off worsened symptoms in my experience. There was a member here recently describing worsened symptoms after a blood draw. This can be a vasovagal reaction that causes a cascade of symptoms.
I agree with Pistol that fluids generally help me when symptoms worsen. Rest is also beneficial.
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Is there any data yet about the interaction of autonomic dysfunction and COVID? eg, is there higher risk to develop long term symptoms if a patient already had dysautonomia prior to their infection? Is there any data to suggest that dysautonomia is a risk factor for other complications?
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I've been confused about that too and only recently realized it is possible to get a third Moderna shot.
Thanks for sharing.
Glad you are well protected.
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On 9/22/2021 at 6:58 AM, yogini said:
Even though we are all vaccinated going to an area in crisis where there are no hospital beds available makes no sense.
Absolutely agree with all you say. And this is an important point as well. We are all at higher risk for health problems when hospital beds, ICUs and ERs are full. It's another reason to avoid risks right now to extent possible. I know our regional hospital has put out the message that people should not go to the ER unless absolutely essential. There are very long waits and they are understaffed.
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So sorry. I haven't heard of swelling as a typical aspect of COVID but I have heard of many people developing rashes weeks after the initial infection. It can definitely cause some weird and long lasting symptoms.
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I can understand your fear.
I am not aware of any information/studies linking tetanus shot to dysautonomia. I would think a tetanus infection would be far worse outcome and if you are at risk for that, the booster surely makes sense.
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I know the feeling you are describing. Salt and fluids and compression have helped. A low dose beta blocker has helped. What has helped the most is IV fluids when I am in a flare. It is also best not to lie down too much for too long, I find. Obviously you need to sleep. But I do not let myself stay in bed longer than 7 hours when in a flare--bc I just end up feeling even worse. I force myself to stay upright during the day--even if I can't do much more than sit up (unless I feel faint--I have never actually fainted--obviously you do not want to force yourself to stay upright if you may faint). In flare ups I can feel very poorly and walking or much activity can be very difficult.
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Aschc good to hear that. The risks associated with the vaccine are very very low for most people, and the risks associated with COVID infection higher to much higher. It's very difficult to predict who may get very ill due to COVID, including long term COVID. Many of us on the forum have been vaccinated and the side effects have been generally minimal.
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Hi Bethany
There has been past discussion about this practitioner
https://www.dinet.org/forums/topic/27306-anyone-have-experience-with-potscarecom-with-dr-driscoll
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I get these when in a flare up. I know it's very disturbing to rest.
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it's possible to have a vasovagal reaction to the needle stick IMO. It's a bit like a panic attack I guess (in terms of symptoms). I know when I am in a flare up I am super sensitive to many normally small triggers, such as getting my blood drawn.
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Was this the topic?
So sorry you are so unwell.
Is it possible you had COVID?
In any case, I have had flare ups that sound really similar to what you are describing. My last flare up I had severe headaches, burning nerve pain all over my body, muscle pain, severe fatigue and weakness, it just felt like everything was going wrong (other symptoms too that were never explained). I had so many tests and everything, everything, looked great. After 6 weeks the symptoms lifted. To this day I question was that all "just POTS" or is there more to it? I have no answers. Relieved it finally went away. But I worry another flare up will return and I have few answers. I do find that IV fluids help and my dr has been great with ordering that when I have flare ups.
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9 hours ago, kisekis said:
yeah and im not the only one who cant contact the clinic
on the dysautonomiaclinic facebook page some people also question that.
do you or anyone maybe know why/what happened?
I looked on the facebook page. It appears from what I read on there, that some patients are not receiving return e-mails in their inbox bc these messages are going to spam. I would check spam and if no message there, try again to contact them, perhaps by phone or via facebook as well as through their website/e-mail.
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There has been a lot of discussion about MCAS on the forum. You might do a search to see if there has been past discussion that may be helpful.
Here are a few past discussions that might be informative for you.
MCAS-Mast Cell Info - Dysautonomia Discussion - Dysautonomia Information Network (DINET)
on the dysautonomiaclinic facebook page some people also question that.
Modera or Pfizer Booster shot--any experiences?
in Dysautonomia Discussion
Posted
Oh wow--that's good--I was hoping for that for me too. Unfortunately I am having symptoms after getting the booster yesterday morning. Not quite as bad as the 2nd Moderna, but I have a fever, headache, dizziness, lethargy. Also my arm is super sore. All of these symptoms popped up within hours of getting the shot.